Each month on the 2nd Thursday at 11:00 am a group of misc. service providers from around the state of Arkansas, advocates from the infected/affected community and guests meets via teleconference. There are different topics for discussion based on current events, however after introductions are made the normal protocol is to discuss “old business”. Because it is deemed as one of the most important and pressing issues, the disparity concerning how many HIV positive clients are not receiving medical care for the diagnosis is addressed. These are individuals who have tested positive but for whatever reason have not had lab blood tests (ie: viral load, CD-4 counts) in the last year done, nor are they currently seeing a doctor for the condition.
There are some different opinions on how many clients this pertains to, however in most conversations including providers who work with the numbers…the statistics are pretty alarming. In some cases stat's stating that up to 2/3 of HIV positive individuals in the state of Arkansas are NOT in care. That would indicate that only 1/3 of known HIV positive people are taking the medications that will help keep them from developing AIDS. It also means that they (the 2/3 not “in care”) are also much more contagious to anyone they may engage in “risky behavior” with.
Because those people with HIV who are responding to their anti-HIV medications have reduced HIV viral load amounts (the desired effect being what's called a “non detectable” viral load amount ie:under 50 copies per millimeter of blood etc). In some cases it may be even less ie <20 copies or less being deemed “undetectable”. It recently has been determined that those who have an undetectable viral amount in their blood are much less likely to transmit HIV if an exposure takes place. Because of this many who advocate for HIV/AIDS related causes are recognizing treatment (medications) as a form of effective prevention of HIV infection.
Each month those of us on the teleconference discuss the many reasons as to why so many here in Arkansas (and all across the south) choose to remain “out of care”. Also those concerned talk about ideas and suggestions to address the on-going crisis. Every year in our state approximately another 500 people will test positive for HIV. We need to ask ourselves…how many less would that number be if 95% or better of positives were “in care” and having an “undetectable” viral load result???? One thing for certain we DO know is it would mean less, and probably much less spreading of this awful disease.
The stigma associated with having HIV is a major factor in my opinion for so many choosing to not seek care and treatment. Not wanting family or friends to find out their status plays a major role as well. Also because this is an illness where symptoms may not show right away, its easy to ignore the reality of an “unrealistic situation”. If you or someone you care about has HIV..please consider seeking medical attention and medications, or recommending it. Lets all try and see if we can't see that infection rate start to go down. Anyone who is concerned about HIV related issues is encouraged to join in on the teleconference call….1-866-217-3840 is the toll free number and the pass code is 0024764……Thanks……Steve May
The last CAB conference call was on March 8th at the normal 11:00am time. Bob facilitated for Ann who was expected to be absent from illness but she joined in late anyhow (thanks Ann). There were a mix of clients from across the state as well as “service providers” participating. Linda mentioned a membership package for those interested in the CPG (Community Planning Group).
Bob brought up the issue of some clients who may need help financial help with housing costs not having the resources based on the county in Arkansas in which they reside being the problem. Bob reminded us that NARAN in the Northeast part of the state has HOPWA (Housing Opportunities for People with AIDS) funding for 41 of the approximately 75 counties in Arkansas. He mentioned that clients living in counties NOT included in the 41 who need housing assistance, could consider moving to one of those counties covered in the grant. Also he mentioned there is always ways a client could “be creative” in ideas that could get them the assistance they might need.
Most of the remainder of the meeting centered on the ongoing issues of the large percentage of HIV positive individuals who are not receiving medical care for their disease (no lab work or HAART medication intervention). Many experts in Arkansas estimate as many as 65% of known HIV positive clients are “not in care” It’s an ongoing issue and even though there are plenty of ideas as to what is causing the problem, coming up with realistic resolution seems to be much more complicated. I have even heard heath care providers adding that mandatory treatment with medication similar to what has been used with TB patients could be needed.
The next CAB conference call will be Thursday April 12th at 11:00am and will be hosted by myself via teleconference call. The toll free number to call is 1-866-217-3840 and the pass code is 002476. Anyone and everyone who is infected with or affected by HIV/AIDS is encouraged to participate. One who would like to just “listen is” is welcome as well. Its a good way to find out more about what’s going on around Arkansas with the issues of HIV care and prevention.
Okay with the meeting out of the way..I'd like to take a moment and point out a couple of things as well. One is something I think does not get done quite enough and that is to recognize and thank some of the folks who do quite a lot for “awareness” and “support” in our state for the infected/affected communities. Particularly in our Northwest part of Arkansas, I'd like to thank the man who recently (finally) decided to accept being nominated president of “HIV Arkansas”…Mr. Michael Burks. Michael has worked tirelessly keeping it all-together for our support network even though he works 2 jobs, has a complicated life (I could go on but I won't..ha..ha) etc, etc. Thank you Michael and also his partner and secretary of the group, Heath Lance, “Thanks to you Heath.”
Also the remainder of the Board of HIV Arkansas..I won't name you all individually, but you all are doing a very worthwhile mission of providing support for those of us who otherwise might be much more isolated without the group. That goes for ALL of the members as well, each time you show up for a group function you have no idea how it may be meaningful to someone, maybe just to have been able to talk with you about the “new diagnosis” or the “very old situation” of dealing with HIV disease. There is politics…and there may be certain members of our group that might not be appealing to all of us…all of the time. However I know without the support of our group..HIV Arkansas, my life would be so much more lonely and isolated. So consider becoming involved with the group if you have not as of yet!!!
The Consumer Advisory Board met by teleconference in September the 2nd Thursday which was the 8th. Debbie opened the meeting and introductions were made from all over the state. There was a good amount of clients on the call as well as service providers and the state health district.
Some months ago there was discussion during a teleconference about mail coming from service providers via “certified mail”. At that time members of the health district said they were discontinuing the policy of those letters needing to be certified as clients feel intimidated by receiving mail that way. Also if the client isn't home to sign for the item, they have to make arrangements to pick the letter up at the post office.
It was noted letters were still coming certified, but staff at the health district assured the group they still intended to transition letters to clients from certified to regular mail. There was a lengthy discussion about using social security numbers as a tracking mechanism for client services. This in turn brought up discussion by Vicki who spoke about Medicare and Medicaid eligibility. Also there was discussion from the group about criteria for a status of being deemed “disabled” due to HIV by social security and the need to hire a lawyer to become approved.
Again looking at items discussed at previous meetings, the topic came up again about access to an emergency supply of medications during a crisis such as a natural disaster. The American Red Cross has a program where they will provide funds to cover a client under those circumstances. However it was noted they have a policy of it being for a maximum of $500.00 total per client and how for most HIV clients that would only cover 10 to 14 days at the price of most current HIV med's. Many times though it's the first few days of crisis after the tornado, flood, or other natural disaster happens until the client has access to normal supply of med's etc.
The announcement of a new HIV medical provider in the Sherwood area was made. The new doctor is a woman named “Dr. Peppers”. Also it was announced medical services for HIV in the Clarksville area has been terminated for the time being. Another item pertaining to medical care in Northwest Arkansas is that there is additional labs services in Bentonville through Quest Diagnostics. HIV testing is upcoming at the Lone Oak Community Center in Lone Oak.
Each month for the past 3-4 months there has been a CPG meeting (Community Planning Group), this group currently is working on issues pertaining to overall sexual health and well-being. In the past month the group has been able to set up a teleconference number as well. The group would like more input by the “HIV Affected” community and the teleconference is avaliable on the 2nd Friday of each month. The toll free number is 1-800-390-5809 Access code is 501-661-2466.
The announcement for the upcoming First Annual Northwest Arkansas HIV Awareness Walk on Saturday 09/10/2011 in Springdale was made. At the time of this article the walk had just been completed, and certainly exceeded my if not everyone's expectations!! Thanks be to everyone who helped put on the event…very nice..indeed. Anyone interested in participating in the next CAB teleconference can call the toll free number 1-866-217-3840 access code 0024764. Mark will host the next meeting on Thursday 10/13/2011 at 11:00am. The November meeting will be held on Thursday, November 10, 2011 at 11 a.m. and the December meeting will be held Thursday, December 8, 2011 at 11 a.m.
The monthly Consumer Advisory Board meeting started right on time at 11:00 AM on Thursday December 09, 2010. Samantha from Living and Affected hosted the meeting. It was decided due to a large amount of agenda items needing to be discussed to forgo the reading and acceptance of minutes from November. The main discussion topic that started the meeting was referred to as “The ADAP Crisis” Recently it has been noted there were 611 clients on ADAP in Arkansas and is expected to be 700 by March of 2011. As a result of ever increasing need to add clients, a waiting list is being implemented.
Ann who is an advocate that sits on an advisory board for the state ADAP program went into detail how having a waiting list under present circumstances “is a good thing”. She talked at length about how it will show the urgent need Arkansas has to supply medications as more clients get into care. There was continued discussion from members of the group about ADAP and the new ADAP Coordinator for the state joined in on the teleconference. His name is Harold and he listened and asked questions about the situation.
Much of the remainder of the meeting was devoted to 1115 Medicaid Waiver. There is a great need for clients and affected individuals to call their law-makers, congress etc. to encourage them to “sign on” to the waiver. The main thing I know about the waiver is that it's a measure where HIV positive clients who qualify would automatically go on Medicaid. This would greatly reduce or eliminate the so called “ADAP crisis”. Any program such as that is very complicated and I will not pretend to tell you all how it works, because quite honestly I'm not sure.
Another topic that came up again at this meeting was the hiring of a new Chief of HIV/STD/HEP-C programs to replace Kevin Dedner who recently resigned. A few comments were made as to whom some clients thought would not make a good choice. There were 4 applicants being considered. It was suggested by more than one member that we could as clients make a “recommendation” for the new hire. It was also noted that Liz Gates who worked in CDC Prevention at the Health District was resigning. In the year that I have lived in Arkansas the turn over at the ADH has been what I”d call “pretty incredible”. The changes in the over-all client services delivery system: DITTO
Hopefully soon stability will return to direct client services in HIV/AIDS programs. One advocate whom is very much respected in Arkansas recently stated to the effect: “We cannot continue to try and do more with less, one only gets less with less”. That my friend is very well put. The next meeting for the HIV/AIDS Consumer Advisory Board is scheduled for 11:00 AM Thursday January 13th. Steve (me) from North West Arkansas (Benton County) will host. Anyone who is infected with or affected by HIV disease is encouraged to participate in the teleconference. Numbers are 1-866-217-3840 toll free and access code is 2836290.
The monthly HIV/AIDS Consumer Advisory Board meeting was held at 11:00 AM on Thursday September 09, 2010. This meeting is held every month on the 2nd Thursday and is open to everyone via teleconference. The toll free number is 1-866-217-3840 and the access code is 2836290. Each month a member of Positive Links (hopefully) will sit in on the meeting and report back “bullet points” of info for those of you who cannot call in. Please consider sitting in sometime as it gives a bit of insight as to what’s going on in our state with HIV/AIDS related issues.
The agency “Living with and Affected by” in the latter part of August had a very successful Counseling, Testing and Referral event that offered ora-sure (quick) and NAT testing. If I understood correctly the NAT test reduced the “window period” (generally 3to 4 months) to 2 weeks!!! So if a person had recently been infected the chance of a false negative would be greatly reduced.
There was quite a bit of general discussion on how changes to overall health care reform is and will be in the future impacting those with HIV, both who qualify for Ryan White B and for those who don't. It was noted that many of the positive changes for those with no current insurance coverage may not fully be implemented until 2014. Bob brought up, as he has noted in several meeting how there are so many who don't receive care because they fall into the category over 200% of poverty level. He has noted on many occasions how well over 50% of infected Arkansans are not currently receiving medical care for their diagnosis.
There was much discussion on how important it is for new positives to have access to Medicaid. The problem is so much of the time that the cut off to be eligible for Medicaid is unrealistic. I don't have the exact amount a person can have in income in Arkansas and qualify, but I think its around $10,000 annually. That is around $875 a month. Most folks could not live on that in Arkansas. Actually I know a few who do, however the main point in the meeting was how it was keeping many in our state out of care for their HIV disease.
There was an announcement of how the Arkansas AIDS Foundation was trying to meet some of that “unmet need”. On Saturday November 6 they will be hosting the 8th annual Arkansas AIDS Walk, in Little Rock. It has been noted that the current priorities for funds raised at this years walk will be social support for those above the 200% of poverty level. The need is great so hopefully the event will be a success.
There were announcements made by me about upcoming events in NW Arkansas. The first being Positive Links 4th Birthday event at the Jones Center on September 11. (Already went and it was really nice and well attended, about 27). Also on September 23 in the Generations room at the Jones Center will be the presentation of the SHARP report. Positive Links is co-sponsoring this event. Good food at 5PM and presentation at 6PM.
Kenneth from El Dorado will be hosting the next CAB meeting which will be held on October 14th at 11:00AM. This meeting is especially for those with HIV so all clients (consumers) are encouraged to phone in and participate. The meeting closed at 11:58 AM